8 days a week

This is my first blog writing with my eyes! Bare with me.

I’m gonna try’n let u into the world of living with MND.

Imagine if you can you wake up on a Monday morning and you can’t move you’re right arm. You try and get out of bed a bit unbalanced and you’re arm just dragging by you’re side. There’s a few men reading this now thinking “Fuck that, how do I sort this morning glory out???”

On Tuesday morning you wake up with no use of you’re left arm as well. You’re trying to shuffle on you’re bum just to sit up, kicking the sheets of you feeling very frustrated. You try’n walk downstairs feeling very vulnerable thinking if I fall here I’m fucked, you’re arms won’t be able to break you’re fall. You will literally fall flat on you’re face.

Wednesday morning you wake up with no use of you’re arms and now you can’t move you’re left leg. (What a fuckin bad week this is turning into!) you try and shuffle you’re bum using you’re left leg to try and get out of bed. Now you’re feeling scared and frustrated and when you finally get downstairs you’re limping around like Quasimodo!! I’ve always got the hump with MND!!!

Thursday morning you wake up and can’t move any part of you’re body. What do you do now? Mnd has taken you’re voice, you can’t communicate. What do you do now? MND has taken away you’re limbs. All you can do is move youre eyes that’s what MND has left you with.

Friday morning you don’t wake up!!!

Just take a minute to think what’s happened this week. Sunday night you felt great the next day you had MND and then the inevitable happened. MND is a killer, taking away you’re dignity, independence, pride, voice, movement and finally you’re life. It doesn’t happen over a week but it can happen over a month. 50% of people diagnosed won’t live beyond 2 years. That’s what MND does nothing more nothing less.

I’ll tell you a terrible story of a man I met with MND. We met at clinical trials in Walton Neuro centre, he was in a wheelchair and hadn’t had MND that long. He used to tell me he had no carer, lived on his own and his grown up son used to carry him upstairs to go to bed. One night in the summer he was asleep and heard voices in his bedroom, he had left the window open and burglars had got in. He told us he was completely terrified watching them rob him and taunting him because they knew he couldn’t move. I was disgusted when he told us and it just shows how vulnerable you are living with this horrendous fuckin illness. He died last year so at least he’s at peace and doesn’t have to worry about living with MND.

I’m lucky in that I’m still walking (just) im lucky to be alive if I’m honest. When I was diagnosed in 2010 I couldn’t have dreamt I’d see 2015. Even with my positive mindset it seemed out of reach. I’m now being fed overnight through my peg tube. I’m getting 2000 calories overnight pumped into me hopefully it’ll work because I’ve lost far to much this year already.

Life with MND is tough and it never gets any easier. There’s no remission there’s no getting better just the inevitable ending of death.

It’s took me fuckin ages writing this with my eyes but I hope you’ve enjoyed reading this part of my journey? It’s also having strange side affects on me!!

Responses

Mark avnt seen ya for ages mate, fck me you’ve changed lad, haha. Sorry to say this mate but didn’t know the effects myself until readin ya blog. One thingMND hasn’t taken is ya personality lad. Puts the shit I moan about into perspective. Best of luck with the fight mate , Jay Doyle

You are an inspiration Mark we all get aches and pains and moan about trivial things but then when you read your blog or comments on twitter you realise you ain’t so bad.
I wish you all the best I know you have a great family behind you which is important throughout life.
#TrueWarrior #YNWA

Hey Mark, glad to read that you are giving the fingers up to MND still. You and I had a tweet chat a year ago and you struck me as a great fella.

My Ma was at Walton too, I am very greatful for what they and Prof Young did at the centre, although the folk on the ward when she had the peg could have been nicer. I hope you experiences were good. Get yourself something cheeky down that peg. I used to chat to a fella on a forum who had his wife tip vodka down his – I am sure it has steralising properties.

You’re a great inspiration and what you’ve acheived since your diagnosis is just amazing. I’ll forever be touched by MND and moved by the bravery of everyone who experiences it.

This is what my husband Keith is moving towards. He is taking care of himself in the hope that good care will keep him alive for a treatment or therapy maybe even a cure.
Agree with you MND is one fucked up disease